A chance to dream

I walked towards my oncologists office as he called me in on Wednesday, still in a fog, still outside my body, my mind in the grip of that defence mechanism that says think the worst, think the worst, think the worst, then it won’t be so hard. But he was smiling as he ushered me in, and his face does for the most part give him away, I’ve seen him look suitably grave when the news he has to deliver is less than ideal…he’s a human, that’s why I like him. STABLE he said, before I even sat down, all stable nothing new. A few curve balls with pain, shitty blood tests and various other mind fucks going in had me pretty certain I was not going to hear this news. Gaz, my friend Kez and I all collectively exhaled. Dodged another bullet, for now.

Amazingly, he started talking to me about targeted liver and lung therapies that may give me more time than chemotherapy alone. There is a procedure called SIRT, which inserts radiation beads into the blood vessels of your liver and places them next to the tumours…it can shrink them, hold them steady for months or years, or, and this is in a lot of cases, do nothing at all. When the liver resection didn’t go ahead, I asked my liver surgeon whether I could have SIRT down the track, but he felt that we had burned that bridge due to blocking up a lot of my liver veins in order to try and get me to resection….it’s unlikely that we will be able to get the beads into where we need due to these blockages. He did say that if it was thought appropriate down the track he could do a special test on my liver to see what veins were still open and available for us, but when it was discovered that I also have lung metastases even that chance was gone as SIRT is only performed if your mets are liver limited. So, I was pretty surprised when my oncologist suggested we look at SIRT and see if I could have it. It’s a rigorous process, very few are considered suitable and of course I have all these blocked veins, so realistically I don’t think it will happen, but I am thrilled that he is going to talk to the liver surgeon and see if we might be able to start testing me for the possibility. If I can have SIRT, they will then do targeted radiation to the four spots on my lungs…they are only small and once again, this could hold them for some time, giving me possibly many more months of life. Honestly, just the general vibe in the room made me feel better…like people were fighting for me again…looking at doing some sort of active treatment, rather than just waiting for chemo to stop working, and for me to die. I’ll keep you posted.

As so, I get yet another chance to dream of a couple of months of settled life. If life throws no more curve balls at me, blood clots, unexpected disease progression etc, then I won’t have a scan again until the end of the January. That is time to have my kitchen renovation started and finished, host Christmas for my family and friends in my own beautiful home, go away to Mitta and walk and ride and swim in the river and drink in the beer garden behind the pub, listen to a bit of music, feel the joy wash over me again, the lassitude. It’s hard to live with the fact that I will never be without this, but I can learn to live with it, if only I have enough time between blows to catch my breath.

I was saying a few days ago that I didn’t think the news of Wednesday would change much about my disassociative state, but in reality, it did. I walked out of the hospital a pretty different person already, the world started to have some colour again, my feet were on the ground. What I have been left with is a kind of “trauma hangover”…and each time I go to the depths of these dark places, I don’t come out the same person. I used to berate myself, think that I was a little “less”, but lately, I have come to realise I am actually a little more. Every time you go to a place you have never been before, no matter how painful, it is a chance to learn, to grow, and most importantly, I have realised, to empathise. To understand others, to truly walk with the broken, to look into the eyes of another and be able to say “I understand, even if just a little bit”. It’s a privilege to be able to do this, and I hope it will make me kinder, and a better friend.

I’m going back into that office today! I have been too long out of it, in my fog, paralysed. Just in the last few days, huge opportunities have started to be presented to me, but I have been in too much of a state to embrace them. Life is there to be lived, I’m going to go back out there and live it. As much as I can, for as long as I can, and I am starting to believe that might be longer than I think

Much love, and hope to all who need it. Thank you so much for loving me through these tough times and never telling me to pull my head out of my own arse. Goodness knows, I tell myself that enough!

Wow! What a roller coaster.
I’m like you, I often imagine the worst and for the same reason! I rationalise that if I can think the worst, then I’m either part way prepared (probably false) and if it doesn’t happen, then I’m vindicated.
I hope you, Gaz and the girls have a wonderful weekend.
XXXXXXX

My heart’s dancing at the thought of you enjoying the silly season. Every month they keep you stable is a month closer to the breakthroughs happenning every day. So today’s a good day for teamjulia. Your writing is so gripping we all feel w’re in this with you. Every day I open up the page to see how you’re doing. And today… you’re doing ok!! So we’re OK!!!! Yippee. xxxx

I am thrilled for you Julia! There is always hope, even though it is sometimes hard to feel it.

Just wondering if one of the targarted drugs your Onc mentioned for the lung mets is Tarceva? I have been on this for 9 months now and have had outstanding results! Yes, there are some horrible side effects (better red than dead!), but these can be mostly managed – I have also had my dose lowered to a more tolerable level but it’s still proving effective. Please don’t rule any of these targarted therapies out for yourself as they can be pretty incredible.
You have a gift for writing and always manage to strike a cord with me. I’m a stage iv lung cancer survivor – 39yo with 3 young kids. It is hands down the hardest thing I have ever had to deal with physically and emotionally but reading your blog makes me feel less alone. Thank you.

Wishing you many, many more days, months and years with your beautiful family. Enjoy Christmas!! Don’t ever give up hope! Xx

I have been following your page for some time. I too have metastasis of my liver from bowel cancer. I too just had news that I’m stable, that means we can have a fantastic Christmas and enjoy. You are an inspiration and I love reading your page, keep inspiring us all.